If you’ve read my posts on MySpondylitisTeam you know that I’ve transitioned to consulting work in environmental health from a traditional full-time job as a gerontologist. I needed the flexibility that consulting offers to manage my time off, treatment, and procedures to improve my quality of life while continuing to earn a living.
I recognize how fortunate I am to have the options available to me that I do. I worked hard, applied myself at a young age, and made some tough choices about what I envisioned for myself. Early on I knew that I am responsible for my success and/or failure. Having that clarity set me on a path for learning about the power of a positive attitude and the success that follows.
Anyone having had a modicum of success will tell you that success was preceded by failure. Once you learn that your world doesn’t fall apart if you don’t succeed on the first try, you’re ready to begin the journey to being successful at almost everything you set out to do. It’s all about attitude. Knowing that has made the difference in how I approach- my close relationships and obligations while navigating everyday life and the healthcare system as a person diagnosed with spondylitis.
Maintaining close relationships can be challenging when you have spondylitis. The random aspects of pain and the onset of a downward spiral are unpredictable. There are times you make plans for a weekend event and by Friday you know you’ll have to postpone those plans. You become skilled at letting others know up-front that you may not be able to follow through with a social engagement. You have every intention and desire to participate, but sometimes you have no control over pain. That’s the reality.
It’s important to give friends a heads-up about what you’re dealing with. I’ve found the resource pages at the bottom of the MySpondylitisTeam website very helpful. No, I don’t email the information randomly. What I’ve done is linked spondylitis to issues associated with my knee replacement surgeries. Friends know of my initial accident and the head-on collision that resulted in my need for full, bilateral knee replacement. They saw my pain and agony as I struggled to move from sitting to standing, getting in and out of the car, climbing stairs, shopping, or walking across a room. That was impossible to ignore. As my friends learned about knee replacement surgery from me, I added information about spondylitis to the conversation. No one has ever heard of spondylitis, trust me. They will stare at you blankly and ask, “Spondy-what?”
It’s difficult for others to see you struggle. You present yourself as confident, positive, and fun. They don’t understand when you initially say, “I have pain.” “I haven’t slept.” “I hurt.” And there’s nothing they can do to help you make it better. Almost overnight you’re not the person they know. From the outside, we look fine —it’s what is happening on the inside that is scary, depressing, and confusing. It’s sad to look into your lover’s eyes and see the yearning to be close, and what you can offer is, “I’m sorry. I hurt.”
Recently I posted a question on the website about intimacy and pain. I was mildly surprised by the number of people who rejoiced in the memory of intimacy with their partners who said, “Go for it!” “If you can, do it. It’s good for your health!” “Why are you reading our answers—go have sex!” Then there were those who stated emphatically, “I gave up sex 10 years ago.” “I’m in too much pain.” “I’ve lost all desire.” The debate rages on, to have sex or not … it all depends on you, how you feel, and the degree of intimacy and respect you have for each other. For me, it’s a work in progress. That’s my attitude at the moment.
As with any medical condition, only you can decide when (or if) to invite your employer into the discussion of spondylitis. It depends. My work as a clinician required daily contact, assessments, and support to families and aging individuals with chronic medical conditions. Some seniors were actively preparing themselves for their final weeks of life. The work is arduous and requires a deep sense of empathy and respect for the individual preferences of older people. I no longer felt emotionally able to give myself to the work necessary to support- the needs of the elderly.
Some accommodation can be made for ergonomic chairs, breaks, medical appointments, and scheduling, but what to do about the daily need to help others and be with those as they breathe their last breath with only you to comfort them? For me the answer was simple. I began to look for ways to transition from the life of a clinician to my final career choice. It took some deep soul-searching and investigating to find interesting opportunities to pursue.
I designed a job based on my skills, ability to work, and desire for a more flexible schedule that would meet my income expectations. I stepped out in faith and took a job in a rural, agricultural community 125 miles north of my home. I made a conscious choice to do something most people my age refuse to do; I left my old life behind and moved.
The journey of spondylitis has been bumpy. I live in a community known as the county with the worst pollution in the United States. Services are not what I had in Southern California. Medical treatment is far from what I experienced in the past. Before me is one of the biggest challenges facing humanity at this time, climate change. The place I live is known for small-particle pollution and high rates of asthma, bronchitis, COPD [chronic obstructive pulmonary disease], diabetes, cancers, obesity, Parkinson’s disease, and Valley fever, to name just a few of the conditions. It’s all tied to toxicity, pollution, and contamination actively impacting our atmosphere and climate. What can I do to make a difference? My question: Is this the opportunity of a lifetime to live and work in “the belly of the beast” where pollution is the precursor to chronic disease and is negatively influencing the climate? Or, shall I just retire, crawl into bed, and retreat into my feelings of loss and depression?
The choice to leave my home, the big city and all of its energy, in favor of an environmental hellhole is not without its benefits. I have the flexibility to work when I feel good, and on those days I’m not, I stay home and sometimes check on friends on MySpondylitisTeam. I don’t feel out of place having a medical diagnosis in this county because 75 percent of the population is struggling with some kind of medical malady too. Being away from my former, stressful, emotionally draining work is replaced by a totally new set of circumstances, people, and places. I’ve met the most interesting people from all walks of life and have amazing adventures just outside my door, if I feel up to it.
How has spondylitis impacted my close relationships and obligations? It’s reinforced my belief that attitude makes a difference. How you approach your diagnosis, deal with flare-ups, depression, pain, intimate relationships, relationships with medical and ancillary professionals, is all about attitude. We have the capacity to set the tone for how we will be treated and what our expectations are. Attitude determines whether those expectations are met and fulfilled or not.
Having a resource like MySpondylitisTeam provides opportunities to reach out to others who understand the symptoms and feelings of worthlessness, anxiety, sleeplessness, IBS, back pain, neck pain, knee and joint pain, financial struggles, insurance or lack of insurance, disability, medication mix-ups, and how to deal with the office manager from hell when you visit the pain management specialist. It’s a community of friends and allies who share their joy, sadness, birthdays, weddings, successes and failures, dreams, fears, and milestones without judgement.
This article was written by MySpondylitisTeam member Rosanna Esparza as part of the Member Spotlight Series. Rosanna works in environmental research and loves spending time with her cat, Ms. Esther, and her dog, Mr. Luna.
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